Meeting ReportEstablishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops
Section snippets
Overview and context
Two SONG-Kids consensus workshops were convened. The first workshop was held on October 27, 2018, in San Diego, California, during the American Society of Nephrology Kidney Week, and the second workshop was held on April 13, 2019, in Melbourne, Australia, during The International Society of Nephrology World Congress of Nephrology. The SONG-Kids consensus workshops were convened to elicit stakeholder feedback on the identification and implementation of a potential core outcomes set for trials in
Overview
From the discussions across both workshops, we identified 4 themes relating to establishing a core outcomes set for trials in children with CKD: survival and life participation as common high priority goals; capturing the whole child and family; ensuring broad relevance across the patient journey; and requiring feasible and valid measures. The respective subthemes are described in the following section. Illustrative quotations for each theme are shown in Table 1. The SONG-Kids core outcomes
Postworkshop Consultation
All participants received a draft workshop report and were asked to provide feedback within a 2-week time frame. The SONG-Kids core outcomes set (Figure 1) was sent to all participants for review and comment. We uploaded the core outcomes set on the SONG website for feedback (https://songinitiative.org/projects/song-kids/). Input from the workshop participants and investigators was integrated into the final report.
Discussion
Patients, caregivers, and health professionals identified survival and life participation to be of critical importance for decision making, emphasizing that these outcomes reflected the goals of care and, therefore, should be included in the core outcomes set. Life participation was thought to capture “the whole” child and incorporated multidimensional aspects of their life including medical, lifestyle, mental health, social functioning, independence, and development or “growing well” in a
Disclosure
All the authors declared no competing interests.
Acknowledgments
The study was funded by The University of Sydney Research Accelerator Grant and the National Health and Medical Research Council (NHMRC) Program Grant Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) (ID 1092957). CSH is supported by the NHMRC Program (grant ID1092957). AT is supported by a NHMRC Fellowship (ID 1106716). SAC is supported by the NHMRC Postgraduate Scholarship (ID 1168994). AKV is supported by a Jacquot Research Establishment Fellowship and a Princess
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